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After 3.5 years with Rebif, we're preparing to make the switch to Gilenya. Has anyone here made this change, and if so have you any words of wisdom? We're happy at the prospect of ditching the needles, but a little nervous as Rebif is the only drug we've used since the Dx.
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I have been on Copaxone for a year, so I can't comment on Gilenya or Rebif for that matter. Here is a good paper that may help you decide on the right therapy for you:
http://www.neurologyreviews.com/file...eatmentCME.pdf -
Not exactly but close. When Gilenya first hit the market I made the switch to it from Copaxone.
I felt so much better. Copaxone doesn't have the flu-like symptoms of Rebif but it was giving me horrid site reactions and making me tired.
With Gilenya - no more site reaction and much more energy.
I will say that initially I found that I was not able to get my heart rate as high as I was able to before it, but this seems to have resolved at this point....or I just recalibrated my expectations.
Good luck to you two, absolutely loved ditching the needles and will never go back!Comment
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Thanks Marinadca! We haven't had many of the flu-like symptoms recently, but fatigue has been persistent and we were starting to have more trouble with injection site issues. Nonetheless Rebif has worked very well. We're very curious to see how much of the fatigue has been the result of the MS, and how much has been coming from the drug.
I know it sounds weird, but I'm having a hard time believing a med that's so much 'easier' to take will be as effective as the Rebif. Kind of like the old saying about medicine having to taste bad in order to work! But I am feeling very worried about a relapse during this transition. For now I calm myself by knocking on wood whenever the topic comes up. I'm doing it right now!Comment
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Just a wee update that I hope could be of help for those considering the switch. Almost half a year in, the results appear to be good. No relapses, yes that sound you hear is me knocking on wood, and a great improvement in the fatigue issues, which it now appears were largely med-related and not MS-driven. We know it may not always be thus, but for now we are very pleased (while still being more than happy to take the occasional Saturday afternoon nap). Heart rate thing has not appeared to be a problem, as a reasonably vigorous exercise regimen continues to be a big part of our MS-management regimen. In short: so far, so good. Fingers crossed.Comment
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have not committed yet.
I am newly diagnosed (1 month] and I'm fairly frustrated with the Neurologist who only continues to push Rebif, Betaseron, and Copaxone. I have only had one episode that has lasted largely from March until now with the only numbness and tingling remaining in my hands and fingers. I understand that the medications are supposed to slow the progression and prevent some of the flare ups from reoccurring. But it seems drastic to me to start injection medication so early with only an MRI diagnosis. This weekend I finally spoke with someone who is taking the Gilenya and it sounds better than a bunch of shots every week. I appreciate reading you notes as it shows me that others have moved away from the home injections. Thoughts? Thank you.Comment
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I wouldn't necessarily call the injectable medications drastic measures. You're going to want to be on some form of disease modifying therapy. Study after study shows that early and consistent treatment lead to better long term outcomes (less disability, fewer relapses, and better quality of life). Those medications are some of the older ones, with lots of long term data showing effectiveness and mild side effect profiles. It sounds to me like your dr might be a little on the risk adverse side. Gilenya is a newer medication and it's side effect profile is a bit steeper. However, if you won't adhere to a given treatment protocol, it's side effect profile or effectiveness won't matter because you're not taking it. Talk it over with your neurologist, and if you are adamantly opposed to injections, make it clear that adhering to those medications would be difficult for you, and talk about Tecfidera or Gilenya as an oral alternative.
FWIW. I'm in a similar boat, I was diagnosed in February. I chose Copaxone, because it's the only Class B DMT on the market (meaning it's shown no issues with pregnancy in animals, but hasn't been fully studied in pregnancy in humans) and my husband and I are trying to have kids. I'm on the 40mg 3xweek. The injections are annoying, I do have injection site reactions, they get red and itch for a couple of days. I'm told those to go away after a while though.
As always, talk to your neuro, listen to what he/she says but also do your own research. Become and informed patient and make decisions together.
Good luck!Comment
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Agreed with Lauren K--there is nothing drastic about starting early with these proven therapies. The earlier you start, the more they can do for you. Remember that symptoms and relapses are a trailing indicator--they come after damage to the brain has occurred. Rebif was the therapy with the best data behind it when we started out. In time it presented issues, but the fact remains that it kept relapses at bay for years. Gilenya is hardly without its own issues, but as with the Rebif I believe these pale in comparison with the disease course endured by most MSers in the years before DMDs were available.Comment
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For me I decided to go with Copaxone after reading the longterm extension study of the original trial.
This shows that of those on Copaxone continuously for 15 years, 57% had stable or improved EDSS scores and 65% did not transition to secondary progressive ms.
http://www.ncbi.nlm.nih.gov/pubmed/20106943
Some will argue that this extension trial is only obsevational and not placebo controlled but realistically you can't have people on placebo for 15 years as this would be inhumane.
Anyway, as others have said it is a personal choice between you and your doctor. Good luck with whatever you decide.Comment
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